This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.

Tuesday, April 14, 2009

When a grandchild is diagnosed with autism, a grandparent mourns twiceâ€”once for their grandchild and again for their child. Having a son or daughter faced with the challenge of raising a child with autism, grandparents want to do all they can to support their children and their grandchildren. SARRCâ€™s Grandparents Support Group is the vision of Kathy Bosco, a grandparent of a child with autism. Kathy recognized the growing need to include grandparents in the circle of help and hope through providinga real understanding of autism. Most importantly, the group focuses on providing grandparents with the tools and knowledge that will empower their entire family as they navigate the world of autism. Since its beginning, Grandparents Group has grown to include more than 300 grandparents throughout Arizona, many of whom have children living across the country. The invaluable blend of hope, research and education gained through presentations at the monthly group meetings help grandparents support their families wherever their location.

The goal of the Grandparent Support Group is to -EMPOWER...the Grandparents Group meets monthlyfrom October through May at SARRC's Campus forExceptional Children. Through facilitated discussions,individuals gain insight, develop strength and find hopethrough shared experiences.ENRICH...Guest speakers and professionalpresentations provide key information on the latestresearch, therapeutic programs and resources available inthe field of autism.SUPPORT...The Grandparents Group is here for you! Byattending the meetings, you will collect vital information,tips and strategies that will help your entire family whereveryou may be on the lifelong journey of autism.GET INVOLVED...Be a member of our dynamicGrandparent Volunteer Team! There are many greatopportunities for grandparents to give back to familiesaffected by autism through volunteerism.

Friday, April 10, 2009

We had our 6 month follow up on April 8th. It went well and overall, his developmental pediatrician said he was improving. The psychiatrist ran some tests earlier that day and even though I thought they asked him some questions that a typical 4 year old would not know the answers to, they said that they were just trying to get a range and that he was performing well.

The one thing I left with that is worrisome is that the pediatrician said that he "may just grow into an Asperger's diagnosis." Huh? Clinicians at SARRC have told me that I shouldn't worry about the diagnosis and just "treat the symptoms," but I can't help but worry. Here I was thinking he may lose his diagnosis eventually, but instead it may just change. I've heard it's common to change a diagnosis but it just seems like a dead end road by saying that he'll grow into another one.

As of Wednesday morning, April 2nd, Joey's Daddy left for the baseball season. We've had a few phone calls since then but haven't heard from him in the last few days. That's ok, since Joey isn't much of a talker on the phone. Joey hasn't asked for him which is good. He told me before Ben left that "Daddy is going away." It made it sound like Daddy was going to jail. The next day, when we passed his old apartment complex, Joey said "that's Daddy's house." Processing emotions can be difficult for him and it almost seems like that's a positive thing during this time.

This workshop is designed for parents, educators, therapists,habilitators and others working or living with preschool and school age children with autism spectrum disorders (ASDs).

Through fun and interactive activities, participants will learn easy to implement strategies and examples of how music can be incorporated into any program in the home, school and community setting. Using applied behavior analysis (ABA) as a framework, participants will also learn how music can be a functional and motivating intervention to teach social,interpersonal, academic and language/communication skills as well as improve attention and participation.

A Behavioral Approach to Promoting Speech and Language in Children with ASDJoanne Gerenser, Ph.D., CCC-SLP

Recommended for speech - language pathologists, occupational therapists, habilitators, families and others working or living with an individual with ASD.This conference will provide a model for integrating research in the areas of psycholinguistic development, early social development, as well as lexical development within behavioral programming for children with autism. Research in the development of joint attention will be reviewed with implications for the deficits present in children with autism. Strategies to promote joint attention behaviors will be provided. Critical skills for the development of speech will be reviewed as well as programs to promote early vocal and verbal behaviors. The workshop will provide an overview of the literature on word learning as well as the nature of the deficits within this area present in children with autism. Concepts such as fast and slow mapping will be reviewed. Programs to develop and expand vocabulary as well as to promote abstract and higher level language will be reviewed.

In addition to the focus on programming, this workshop will address the complexities of meeting the speech, language and communication needs of individuals with ASD across the different disciplines. Specifically, strategies for collaboration among the behavior analyst, speech-language pathologist and classroom teaching staff will be discussed.

Agenda8:30 - 9:00 a.m.Registration9:00 a.m. – 12:00 p.m.Dr. Joanne Gerenser12:30-1:30 p.m.Lunch(Lunch not included)1:30-4:00 p.mDr. Joanne Gerenser continued4:00-5:00 p.m.Panel Question & AnswerTeresa Cardon, M.A., CCC-SLPDr. Jeanne Wilcox, Ph.D., CCC-SLPWhen:Thursday, May 21, 2009Where:SARRC300 N. 18th Street, Phoenix, AZ 85006Cost:$65Susan Fugate, M.S., CCP-SLPPatty McCartney, M.S., CCC-SLPNicolette Judge, M.S., CCC-SLPLearner Objectives1. The participant will gain an understanding of the specific language learning challenges associated with ASD2. The participant will understand the possible challenges faced by different disciplines working together on a team to address the speech-language needs of learners with ASD3. The participant will be able to describe joint attention as well as understand the challenges in development of these behaviors in learners with ASD4. The participant will identify a number of strategies to promote joint attention behaviors in young children with ASD5. The participant will discuss speech development as well as the challenges to speech development in children with ASD6. The participant will be able to develop a program to address verbal and vocal development in children with ASD7. The participant will be able to discuss concepts such as lexical development and organization, fast and slow mapping and how these concepts apply to children with ASD8. The participant will be able to discuss the procedures of applied behavior analysis and how to use those procedures in treatment.Joanne Gerenser, Ph.D., CCC-SLPJoanne is the Executive Director of the Eden II Programs. She received her Master’s degree in Speech and Hearing at the Ohio State University and her Ph.D. in Speech and Hearing Science at the City University of New York Graduate Center. She is an adjunct Assistant Professor at Brooklyn College as well as Penn State University. Joanne is a member of the Scientific Advisory Council for the Organization for Autism Research. Joanne is co-author of the interactive CD-ROM entitled "Behavioral Programming for Children with Autism". She has authored several book chapters and articles on autism and developmental disabilities. She is an Associate Editor of the Journal of Speech-Language Pathology and Applied Behavior Analysis. She sits on a number of Professional Advisory Boards for several programs serving children and adults with autism in the US and abroad. She has received numerous awards for her work with children and adults with autism, including the Nassau Suffolk Autism Lifetime Achievement Award, the Mosaic Foundation’s Educator of Excellence Award, the Elija Chariot Award, as well as Staten Island’s Albert V. Maniscalco Community Service Award.This course is offered for a total of 0.6 ASHA CEU’s (Intermediate level,Professional area), ASHA CE Provider approval does not imply endorsement of course content, specific products or clinical proceduresRegistration: A Behavioral Approach to Promoting Speech and Language in Children with ASD.Please make checks payable to: SARRC300 N. 18th Street, Phoenix, AZ 85006To register, please call: (480) 603-3284 oremail training@autismcenter.orgCancellations received seven working days prior to this presentation are refundable less a $40.00 administrative charge.Payment is nonrefundable for cancellations made after May 15, 2009.Thursday, May 21, 2009Amount included: $ Registration Fee $65.00 per personName: Name of Organization:AddressCity: State: Zip:Email:Work Phone :( ) Cell :( )

This conference was great and I would highly recommend it to anyone interested. I was only able to go one day instead of both days but I felt like I walked away with a lot more knowledge than when I walked in.

Jeanie McAfee, M.D., will introduce the step-by-step emotional skills and stress management programs presented in her internationally acclaimed book, Navigating the Social World. Attendees will learn to use elements of cognitive behavioral therapy, applied behavioral therapy, and other techniques to help individuals with high functioning autism and related disorders to identify and deal with stress, anger, and other emotions."

I started off the day listening to a speaker that has walked a mile in our shoes. It was also nice to be in a room with people who have been there. However, there were also educators who are not parents of children with ASD and as always, I found them very insensitive.

Then, I went to this room:

"Enhancing Everyday Communication with Visual Supports

Teresa Cardon, M.A. CCC-SLP has worked with individuals on the autism spectrum for over 16 years. She has helped many parents and teachers develop intervention strategies so they can increase social communication skills in the children, teens, and adults they work with. Teresa Cardon is the author of three major books for ASD, Top Ten Tips: A Survival Guide for Families with Children on the Autism Spectrum (2008), Initiations and Interactions (2006), and Let's Talk Emotions (2004). Teresa currently works as a Speech Language Pathologist for the Infant Child Research Programs at Arizona State University, with a primary focus on working with children with autism."

I found this great as it gave me many ideas on how to use visual supports. I am new to this so I only have a daily picture schedule for Joey, as well as, I made a book with a story in it for Joey to understand when his Dad left. They gave me ideas such as using pictures in sequence to get a task done. For example, put up pictures on the bathroom mirror and each can show a step in getting something done like brushing his teeth or taking a bath. I also learned about doing a "First and Then" board so Joey can understand the sequence of events that need to happen.

The best thing I learned from the visual supports meeting is that instead of taking the "Time with Daddy" sticker off his board and out of the mix, I can put a red circle with line through it, like a "No Smoking" sign, this way Joey doesn't think I am just hiding the sticker but maybe will understand that it's just not an option at this time.

Saturday, April 4, 2009

There are so many events around town this weekend. Here is one of them!

The Phoenix Film Festival:The Family Film Event is presented by Southwest Autism Research & Resource Center (SARRC) and features short films especially for families to enjoy together. We will be presenting three short films which will be followed by a talk from Holocaust survivor Gerda Weissman Klein, whose story was made into the Oscar- and Emmy-winning film, One Survivor Remembers. The following films will be presented as part of this program: The Velveteen Rabbit directed by Denise Quesnel A toy rabbit yearns to become 'Real' through a child's love. Through his journey, the Velveteen Rabbit learns the mystery of Nursery Magic and becomes Real in more than one way. Presented by Kids First! I’m Here and Wings of EPOH based on the story by Gerda Weissmann Klein Creatively interpreted by Peter H. Reynolds (Illustrator) and Paul A. Reynolds The films Wings of EPOH and I'm Here have been developed to promote increased awareness, tolerance and support for students with social differences. The films can be presented either at a school-wide assembly, in the classroom or in a small group setting. Also included are tips for peers, teachers and parents about how to help children with autism spectrum disorders (ASDs) or other social differences learn strategies for social communication in the home, school and community. Saturday April 4th from 12 - 1pm.

This is a personal one because the Director is my brother!Cowboy DreamsWild Bill Crum (Bill Engvall) is a cowboy with a past. He's good with a gun - maybe too good. That skill has made him a target for every wannabe tough guy and aspiring gunslick in the West. While Bill has survived physically, he is haunted by the echoes of his bloody past.This angst manifests itself in nightly dreams in which he faces - again and again - the soulless menace that represents his former, more violent self, or perhaps the spirits of those who have faced his guns and lost. In restless slumber each night Bill makes the terrible ride away from all that he knows is good and beautiful - pulled inexorably towards an inevitable showdown. He is drawn to a fate he fears as he is stripped of his natural confidence and self-assurance.At last Bill is driven to share this personal torment with the men in whose hands he puts his life every day in the brutal existence of the trail-riding cowboy. At his saddle partner's insistence, Bill tells the men of his nightly terrors. In the flickering firelight the cowboys cannot hide their surprise and confusion at his tale. These are men accustomed to hard work and simple pleasures. They can't possibly be expected to comprehend the depths and complexity of the human psyche. Or can they?As Bill bares his soul to the other cowboys, their reactions - and subsequent analysis - prove to be enlightening and more than a little humorous. Saturday April 4th at 2:15 and Sunday April 5th at 4:30.